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Ontario Pancreas Cancer Study
Spring 2015
Ontario Pancreas Cancer Study (OPCS)
The OPCS is conducted to iden fy and characterize causes of pancreas cancer, including gene c, environmental, and
lifestyle factors, as well as what treatments are available to pa ents with this disease. The results from this study will
help us be er understand risk factors, pa erns of inheritance, and discover possible gene c and biochemical
markers of pancreas cancer. In addi on, we are interested in evalua ng pancreas cancer screening techniques with
the hope that, in the future, this disease may be detected at an early stage.
The first stage of the study involves obtaining informa on about family history, treatment, and personal history/
lifestyle from a ques onnaire package that is mailed to par cipants. The second stage of the study involves collec ng
blood (or saliva), medical records, and any available ssue samples from previous biopsies or surgeries (if applicable).
These samples are used to inves gate poten al sources of gene c risk of pancreas cancer. Gene c counselling is
available to every par cipant. If there is a family history of cancer, gene c counsellors provide informa on and make
referrals for further gene c assessment and possibly gene c tes ng when appropriate.
We are now in our 12th year and are fortunate to have an outstanding team of researchers, gene c counsellors and
clinicians, and together, we are collabora ng on mul ple na onal and interna onal research projects. The Ontario Pancreas Cancer Study team greatly appreciates the par cipa on of everyone involved. If you have any ques ons
regarding the newsle er or would like to be involved with our research, please do not hesitate to contact us. You can
also call our toll free number at 1‐877‐586‐1559 and leave a message. We will be happy to hear from you and answer
your ques ons.
Ayelet Borgida, MSc
Research Coordinator, Ontario Pancreas Cancer Study
Zane Cohen Centre for Diges ve Diseases
www.zanecohencentre.ca
The Ontario Ins tute for Cancer Research (OICR) Dr. Steven Gallinger, Principal Inves gator of the OPCS, has recently been appointed as head of the Transla onal
Research Ini a ve in pancreas cancer, termed PanCuRx, at the OICR. The OICR is an innova ve cancer research and
development ins tute dedicated to preven on, early detec on, diagnosis and treatment of cancer. The Ins tute is an
independent, not‐for‐profit corpora on, supported by the Government of Ontario. The OPCS is now integrated with
the Interna onal Cancer Genome Consor um (www.icgc.org) at the OICR. The ICGC was set up to help researchers
around the world study gene c changes in 50 different types of cancer so that they can learn about the causes of
cancer. This will lead to new ways to prevent, detect and treat cancer. The OICR is leading the study on pancreas
cancer.
OICR recently formed a partnership with researchers from the Ins tute for Medical Research Israel‐Canada (IMRIC) at
the Hebrew University of Jerusalem and Sheba Medical Center in Tel‐Aviv, Israel. This project is called the Alex U.
Soyka Pancrea c Cancer Research Project and is made possible through a mul ‐year commitment by Sylvia Soyka,
director, and the Board of Trustees of the SMGS Family Founda on to the Canadian Friends of the Hebrew University
(CFHU). For more informa on about these and other collabora ons, please visit www.oicr.on.ca.
We Build Knowledge To Improve Treatment
1
BRCA Muta ons in Pancrea c Cancer
Spring Holter, MS (C)CGC, Gene c Counsellor, Familial Gastrointes nal Cancer Registry
A study by our group was recently published in the Journal of Clinical Oncology (JCO) that looked at the rate of
BRCA1 and BRCA2 muta ons in individuals with newly diagnosed pancreas cancer. The BRCA genes are most
commonly associated with an increased risk of developing female breast and ovarian cancer. However, it has long
been known that individuals who carry changes (muta ons) in these genes also have a higher risk of developing
other types of cancers including pancreas cancer.
Although many studies have been published on BRCA muta ons and pancreas cancer, no group had determined the
actual muta on rate in consecu ve, newly diagnosed pa ents. This is important to help physicians and gene c
counsellors be er understand which pa ents and family members may benefit from being referred to a gene cs
clinic.
All newly diagnosed pancreas cancer pa ents at the University Health Network were asked to par cipate in this
study. Par cipants provided a blood sample for BRCA gene c tes ng. Over a two‐year period, 306 par cipants were
recruited into the study. BRCA muta ons were found in 14 individuals for an overall rate of 4.6% (14/306). Certain
factors were more common in the individuals with BRCA muta ons, such as a family history of breast and/or ovarian
cancer and being of Ashkenazi Jewish descent. However, one of the most interes ng findings of the study is that the
majority of individuals we iden fied with a BRCA muta on do not have a strong family history of breast or ovarian
cancer.
Using this informa on, we are now recommending that all pa ents with pancreas cancer who are of Ashkenazi Jewish descent be offered tes ng for the common Jewish BRCA muta ons regardless of family history. For pa ents
with pancreas cancer who are not Ashkenazi Jewish, we s ll need to rely on family history to offer BRCA gene c
tes ng. We hope that this study data may be used to change the current Ontario Ministry of Health BRCA gene c
tes ng criteria to allow broader gene c tes ng for pa ents with pancreas cancer.
The Wallace McCain Centre for Pancrea c Cancer
Pancreas cancer is an aggressive disease where many people are diagnosed at an advanced stage. It can be difficult
to detect as symptoms are o en vague and can con nue for months before people visit their doctor. As part of the
GI (gastrointes nal) cancer group at Princess Margaret Cancer Centre, there is a team of dedicated professionals
focused on providing excellent care to individuals with pancreas cancer. In March of 2011, Wallace and Margaret
McCain generously donated five million dollars with the focus of ensuring all pa ents with pancreas cancer coming
to Princess Margaret receive the highest quality care with mely diagnosis and treatment plans. Wallace McCain
ba led pancreas cancer for 14 months.
The McCain Centre for Pancrea c Cancer is co‐chaired by Dr. Malcolm Moore, Head of Medical Oncology and
Director of the Bras Family New Drug Development Program and Dr. Steven Gallinger, Head of the Hepatobiliary/
Pancreas Surgical Oncology Program. They both provide direct care to individuals with pancreas cancer and are
commi ed to research and academic developments to improve the management and long term survival for those
figh ng this disease. The McCain Centre for Pancrea c Cancer has an ongoing mission to con nue to advance the
quality of care provided for these pa ents and will develop new and innova ve ways to improve the outcomes for
those with pancreas cancer.
We Build Knowledge To Improve Treatment
2
Research
Opportuni ons in Pancrea
es at The Wallacec Cancer McCain Centre
BRCA Muta
Anna Dodd, Clinical Research Coordinator, McCain Centre for Pancrea c Cancer
The McCain Centre for Pancrea c Cancer at the Princess Margaret Cancer Centre has an interna onally recognized
research program. There are currently more than fi een research projects underway with many more close to start‐
up. Some of the goals of these projects include looking at how pa ents respond to and tolerate chemotherapy,
exploring gene c factors that may play a role in the development of pancreas cancer, and tes ng new drug
therapies through clinical trials.
Every pa ent seen at the McCain Centre is offered an opportunity to par cipate in research. This may include taking
part in the OPCS, dona ng blood for gene c studies or being asked to have an extra CT or MRI (body scan)
performed. Pa ents can be assured that their doctor will discuss any new therapies or clinical trials that are available
to them at the Princess Margaret Cancer Centre. Par cipa ng in research will never take priority over a pa ent’s
treatment plan and medical care.
We greatly appreciate the par cipa on of all pa ents, families and caregivers in our various research projects. If
you are interested in more informa on about clinical trials or other research ini a ves at the McCain Centre at
Princess Margaret Cancer Centre, please contact Anna Dodd, Clinical Research Coordinator at 416‐946‐4501 ext.
3176 or by email ([email protected]).
LOCATION The Wallace McCain Centre for Pancrea c Cancer clinic
is located on the 4th floor of the Princess Margaret Cancer Centre in the GI Clinic.
HOURS & CONTACT INFORMATION Monday – Friday, 8:00 AM – 4:00 PM
Phone: 416‐946‐2184
The Wallace McCain Centre for Pancrea c Cancer is commi ed to contac ng all people
referred to them within 48 hours. They will contact everyone to inform them that their referral is
being processed and will ask about anything they can assist with before the first appointment.
FOR MORE INFORMATION, PLEASE VISIT: www.theprincessmargaret.ca
We Build Knowledge To Improve Treatment
3
Rela onship between Family History of Cancer and Medical History and Pancrea c Cancer Risk Gord Fehringer, Ph.D. Epidemiology, The Lunenfeld‐Tanenbaum Research Ins tute
A study by our group was published in the journal Pancreas in July 2014 that looked at both a person’s family history
of cancer and personal medical history to see if these factors influenced the chance of developing pancreas cancer.
Informa on from par cipants with pancreas cancer, who par cipated in the Ontario Pancreas Cancer Study from
2003‐2009, was compared with informa on from healthy people who were recruited through the Family Medicine
Centre at the Lunenfeld‐Tanenbaum Research Ins tute at Mount Sinai Hospital.
We looked at the family history of several cancers such as pancreas, prostate, breast and colon. We found that
people with a family history of pancreas cancer are almost twice as likely to develop pancreas cancer than those
who do not have a family history of pancreas cancer. This has also been found in previous studies. We also found
that having a family history of prostate cancer doubles the risk of developing pancreas cancer, but only among non‐
smokers. One interpreta on of this finding is that some gene c factors that affect prostate cancer may also affect
pancreas cancer, but in non‐smokers only. The rela onship between family history of prostate cancer and pancreas
cancer has been seen in some studies but not others. Addi onal studies are needed in order to provide support for
this rela onship, par cularly in non‐smokers.
In our study, people with diabetes and pancrea s (inflamma on of the pancreas) had a higher risk of developing
pancreas cancer. People who had diabetes for a long me (10 or more years) were more likely to develop pancreas
cancer than those who did not have diabetes. Many researchers think that diabetes might lead to pancreas cancer,
so these types of results are important as it provides more informa on to support a rela onship between long‐term
diabetes and pancreas cancer risk. In the future, this knowledge may help to predict which people are more likely to
develop pancreas cancer. This in turn may help to prevent the disease or detect it earlier so it can be more
effec vely treated.
Familial Pancreas Cancer Gene c Study
Our Registry is collabora ng with several other pancreas cancer registries in North America on a gene c study called
PACGENE (Pancrea c Cancer Gene c Epidemiology). The goal of this study is to learn about the causes of pancreas
cancer — both gene c and environmental. So far, our centre has enrolled approximately 600 families across Canada
for this research and study recruitment con nues. Funding for the PACGENE Consor um has been received through
a grant from the Na onal Cancer Ins tute.
Which families are eligible to par cipate?
Any family with two or more biologically‐related individuals with pancreas adenocarcinoma is welcome to contact
our registry. We recruit families where the cases of pancreas cancer are living and/or deceased.
We Build Knowledge To Improve Treatment
4
What does par cipa on involve?
We ask details about the family history of cancer. We obtain the medical records (where possible) for each diagnosis
of cancer in the family. We are interested in enrolling people with cancer as well as their healthy rela ves.
Par cipants are asked to complete a ques onnaire asking about lifestyle and various environmental risk factors. We
also ask par cipants to provide a blood or saliva sample and/or a ssue sample (from previous surgical procedures)
for gene c studies. The most helpful samples are from rela ves with pancreas cancer. All par cipants have an
opportunity to speak with a gene c counsellor about their family history and the details of the research.
Par cipa on in this study does not require a trip to Toronto.
Who do I contact to par cipate?
Please e‐mail [email protected] or call toll free at 1‐877‐586‐1559 and leave us a message.
Pancreas Cancer Screening Study
As with other types of cancers, early detec on is associated with be er prognosis. Unfortunately, the majority of
pancreas cancer cases are diagnosed at advanced stages. This is mainly because of the lack of early symptoms. A
number of American and European research groups have been studying various screening techniques for detec ng
early stage pancreas cancer, but there currently are no proven effec ve clinical screening recommenda ons.
The pancreas cancer screening study at Mount Sinai Hospital and the University Health Network began in 2003. Our
ini al goal was to determine the effec veness of annual MRI (magne c resonance imaging) and abdominal
ultrasound for early detec on of pancreas cancer. In 2011, we analyzed the data collected from the first eight years
of the study and found that although pancreas cancer was found in some high‐risk individuals, it wasn’t found at an
early stage. This prompted us to change the study. The current protocol being followed is using contrast‐MRI every
six months instead of every year. We are s ll collec ng data, but our hope is that this new protocol will prove to be
more effec ve at detec ng early pancreas cancer than our previous methods.
At this me, the study is closed to new enrollment. However, the study is taking names for a wait list. If new study
slots are available, those on the wait list may be contacted for par cipa on. For more informa on about who is
eligible for the screening study, please see the study website: www.zanecohencentre.ca/gi‐cancers/opcs or you can
email [email protected] or call toll free at 1‐877‐586‐1559 and leave a message.
A generous dona on was made by Pancrea c Cancer Canada to the Princess Margaret Hospital Founda on to support our con nued research in the early detec on of pancreas cancer. For more informa on about the Pancrea c Cancer Canada founda on, please visit their website: www.pancrea ccancercanada.ca. We Build Knowledge To Improve Treatment
5
Stay In Touch... Please keep us informed of any changes in your family
history of cancer or other condi ons. We are interested in
this informa on for all blood rela ves in the family. If you are
par cipa ng on behalf of someone with pancreas cancer,
please update us with changes to his/her family history. It is
helpful to track this informa on for research purposes, but it
is also important in our assessment of the family history and
can help guide clinical recommenda ons for family members.
Please also no fy us with changes to your contact
informa on.
The Best Research for the Best Treatment and Care We Invite You To Partner With Us … … so we can quickly bring new and evolving knowledge into clinical prac ce If there are any changes, please take a moment to leave us a
phone message at 1‐877‐586‐1559 or email us at
[email protected].
Contact Informa on Website: www.zanecohencentre.ca
Toll Free Number:
1‐877‐586‐1559
There are many ways to support us.
To find out how please contact:
Dr. Steven Gallinger Dr. Michelle Co erchio
Principal Inves gator
Co‐Inves gator
Patricia Tolkin Eppel PhD
Advancement Director
Mount Sinai Hospital Founda on
416‐586‐4800 x 2956
[email protected]
To donate online
www.zanecohencentre.ca/donate
Ayelet Borgida, MSc OPCS Research Coordinator
416‐586‐4800 x 2110
[email protected]
Kara Semo uk MS, (C) CGC Spring Holter MS, (C) CGC Gene c Counsellor
416‐586‐4800 x 6119
ksemo [email protected]
Gene c Counsellor
416‐586‐4800 x 2088
[email protected]
Network Newsle er: Ontario Pancreas Cancer Study
Editor: Ayelet Borgida
Tel: 416‐586‐4800 x 2110
Email: [email protected]
Zane Cohen Centre for Diges ve Diseases
60 Murray Street, 3rd Floor
Toronto, Ontario, Canada M5T 3L9
Toll Free: 1‐877‐586‐1559 Web: www.zanecohencentre.ca